I know because of years undiagnosed and or misdiagnosed, lupus and a host of other things have really wrecked my health, doing permanent damage. I'm very much fighting heading towards denial, because it won't change the reality.
Changing from this life to what lies beyond doesn't scare me because of my spiritual beliefs and faith, but the aftermath of what happens to loved ones is a real concern. I'm in much worse shape that anyone knows.
For those of you here, who have lived with lupus for a long time, what helps you handle the emotional components?
As things seem to be progressing more rapidly for me, what advice could you share?
I really appreciate all the support and help I have already found here. Everyone is helping me to stay focused on thriving. I can accept the hand I've been dealt, just have to learn how to play it well.
I wish I could give you words of wisdom but all I can say is that I completely understand how you feel and I am also in the same position as you are in. Just know you are not alone and keep up hope that a cure is found. I will keep u in my prayers.
I am sorry that your disease is progressing. I would make sure that your loved ones knew how special they are to you. Pictures are such a great memory. My mother died from Lupus 13 years ago and it just warms my heart to see pictures of us together. Build memories and your loved ones will have smiles come to their face even when they are grieving. I will keep you in my prayers.
It sounds weird, but every time I feel like I am on the way out, something comes along and changes things for the better. I have lupus, and am almost 64. Was diagnosed after years of suffering in 05. When I got the news of what I have, I began to look for ways to cure it. I don't think curing it is possible at this point, but have had huge benefits in avoiding foods I have been diagnosed to be allergic to. At first I didn't think avoiding those foods would be beneficial, but I have found that it can be extremely helpful. So, what I guess I am saying is, check out everything you are allergic to, and I am certain there are things-and avoid them. You might gain more time than you thought.
I can relate as well. I think the hardest part for me was trying to had my emotions from my children and husband when I'm not feeling well. I finally realized their support is what keeps me going. Prayer is definitely a plus. My advice is to take one day at a time. I pray that they find a cure for all of us!
I must say I have my ups and downs just like RJQ and also have gotten thru the hard times. 2 summers ago I was in a wheelchair, running high fevers(104-5), hospitalized for over a week, told it was a Lupus flare and I did not think that I could get better. Today, no wheelchair, working full time, and have a few good days 2-5 per week. Avoiding processed food seems to help.
Excellent to see you are doing SO much better, flower! I am still considered disabled, can't work, and would love to get back to work. I think that perhaps too much irreversible damage occurred during the years before I was diagnosed. I kicker is that, even tho I have Lupus, I wasn't able to get SSDI. So, had to wait for SS at age 62. I also breed some Jack Russell puppies each year to supplement my income. The dogs don't care if I am tired. LOL!
I can relate as well. I think the hardest part for me was trying to had my emotions from my children and husband when I'm not feeling well. I finally realized their support is what keeps me going. Prayer is definitely a plus. My advice is to take one day at a time. I pray that they find a cure for all of us!
I get through it by not letting Lupus own me. I also pray a lot. Remember that you are you and NOT Lupus. I guess what I am trying to say is take it a day at a time and get as much joy and happiness you can get from every day. My thoughts and prayers are with you and I hope that you start feeling better soon. Remember you are not alone we are right there with you.
I agree with all the sentiments here, and take it one day at a time. I'm trying to improve my diet with healthy vegetables, and cutting out the processed foods. I've had some trouble with that lately because I just don't have an appetite, but I don't seem to lose weight either. I'm not giving up though. Last night I was able to sleep for 4 solid hours before I woke up, and this is a first for me in a long, long time. I'm optimistic, and always hopeful.
Thanks to everyone for your caring support and help. I know how hard it is to even get up energy to post sometimes, like now for me. Off to rest while all is quiet. More later. hugs
How do you put your affairs in order when people don't realize you are that ill? I started making different lists-things to do now (to make it better for me), things that need to go now-better to give things away now, just saying to the recipients I want you to have this(making it better for them). Another list for clearing out junk and simplifying your life. Make plans for a clean up day where you direct traffic...like Spring cleaning day. Use this same day to give some thing away. I made a special packet with all my arrangements filled in, with insurance policies, phone numbers, etc. In my journal I am writing separate goodbye letters, these go into separate envelopes, addressed to person they are meant for and then they go into the special packet. I hope my plans have given you some ideas.
Than you Rejara. Sounds like you have a good handle on this whole process. You have helped. I want so much to live moment by moment, to make the best of things, be grateful. Have never been materialistic, people matter not things. Sentimental and loving reminders are different. When my voice isn't pooped out, I say what I need to, what others will remember hearing from me. The pep talks, congratulations, a willing ear and hand to hold, hugs and kisses, smiles and laughter. A legacy of love is all that matters. I will go when it's time with dignity and grace.
I am so sorry that things are not going well right now, but you cannot give up. When diagnosed I was already at stage 4 Nephritis as well as having had a stroke. At the ripe old age of 44. My husband is 9 years younger than I am and we have had "the talk". He is adamant that he will never marry again, etc. however that would be the last thing that I would wish for.
I didn't know it at the time but I was approximately 1-2 WEEKS away from complete organ failure. I only understand it now as at the time I was severely cognitively impaired and didn't understand the full impact what I was being told, especially when my husband was out of town and couldn't go with me. Without his going with me, at the request (demand) of the doctor I very likely would be gone today and was prepared for that. My husband WAS NOT.
My medication is starting to work and I feel better than I've felt in years. I have to believe that I am still here for a reason. Just as you are here for a reason. As long as you are willing to fight for your health, you will be here for a long time. I know that you make my life better.
I agree Deanne, I have kidney involvement as well. I remember having to go through chemotherpay at the age of 22 right after I got married. I was told I wasn't going to be able to have kids. Well guess what I have two a boy and a girl. I'm so blesssed. I feel that God has a plan for me as well.
Jen to my knowledge there is no cure for it. Yes it can be. Thats the scary part. I try to stay positive and tell myself that no one is promised tomorrow and just live my life to the fullest. Hopefully they find a cure for it soon. Jend719 said:
Please pardon the stupid question I am about to ask...is lupus always fatal?
It’s not ALWAYS fatal but it can be… Alot of people live full and happy lives and die of old age so don’t get too down about it think positive!! I try to but sometimes things do get to me a bit but I always manage to get myself up again
Thank DeAnne for sharing your story, and being lovingly encouraging. I'm not giving up.
I have numerous health issues, but most of them could be attributed to lupus. My diagnosis list, labs, medical procedures, radiology, hospital admissions, specialist ad doctor visits, could fill the entire reference section of a major city library. The national archives perhaps.
I have what I call "worst case scenario genetics", plus have not dealt until recently with my stressors properly. Am learning. No other women in my generation, and the ones in the last two went young. I keep telling myself I am going to be like most of my great great grandparents and hit 90+.
For now, it's day by day. But preparing loved ones for what eventually comes isn't a bad thing, but caring. Having my affairs in order , how much easier would it be if something happened in a flash. I can't even count how many people I know that are already moved on to the after life. And you are absolutely right, still here for a reason.
love and hugs
whathappensinvegas said:
Sweetie,
I am so sorry that things are not going well right now, but you cannot give up. When diagnosed I was already at stage 4 Nephritis as well as having had a stroke. At the ripe old age of 44. My husband is 9 years younger than I am and we have had "the talk". He is adamant that he will never marry again, etc. however that would be the last thing that I would wish for.
I didn't know it at the time but I was approximately 1-2 WEEKS away from complete organ failure. I only understand it now as at the time I was severely cognitively impaired and didn't understand the full impact what I was being told, especially when my husband was out of town and couldn't go with me. Without his going with me, at the request (demand) of the doctor I very likely would be gone today and was prepared for that. My husband WAS NOT.
My medication is starting to work and I feel better than I've felt in years. I have to believe that I am still here for a reason. Just as you are here for a reason. As long as you are willing to fight for your health, you will be here for a long time. I know that you make my life better.
